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Hello everyone, Several people on this forum have said some very kind things about the book I published a couple of years ago - Polymyalgia Rheumatica and Giant Cell Arteritis - a survival guide. Right now I am working on the second edition. Mostly for the 'patient experience' bit I was drawing on
Hello everyone, Several people on this forum have said some very kind things about the book I published a couple of years ago - Polymyalgia Rheumatica and Giant Cell Arteritis - a survival guide. Right now I am working on the second edition. Mostly for the 'patient experience' bit I was drawing on
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
8 years ago
Eventful and frustrating few weeks.
For about ten days one or other of us had gastro
enteritis
! Managed to both have it for a couple of days in the middle of the ten days and lost over 6lbs! A bit of a dramatic way to get rid of the extra lbs!
For about ten days one or other of us had gastro
enteritis
! Managed to both have it for a couple of days in the middle of the ten days and lost over 6lbs! A bit of a dramatic way to get rid of the extra lbs!
freefaller
in
Aspergillosis and Rare Fungal Infection Support
8 years ago
FRUSTRATING FEW WEEKS.
Both of us had a dreadful bout of gastro
enteritis
last week so couldn't get to my breathe easy meeting but couldn't get in touch with anyone as no internet or telephone! No mobile signal here until the new mast was put into service the day after the missed meeting!
Both of us had a dreadful bout of gastro
enteritis
last week so couldn't get to my breathe easy meeting but couldn't get in touch with anyone as no internet or telephone! No mobile signal here until the new mast was put into service the day after the missed meeting!
freefaller
in
Lung Conditions Community Forum
8 years ago
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New Research from USA about drugs and GCA-- some of this s quite technical but a lay person should be able to follow the gist.
Tocilizumab plus prednisolone was twice as effective as placebo plus prednisolone at inducing complete remission in patients with giant cell arteritis (GCA), and four times as effective at producing relapse-free survival in a small, phase 2, randomized, double-blind, placebo-controlled trial. Patients
Tocilizumab plus prednisolone was twice as effective as placebo plus prednisolone at inducing complete remission in patients with giant cell arteritis (GCA), and four times as effective at producing relapse-free survival in a small, phase 2, randomized, double-blind, placebo-controlled trial. Patients
Judigardener
in
PMRGCAuk
8 years ago
Books on PMR & GCA
There is a new book on the block coming out in May: Polymyalgia Rheumatica and Giant Cell Arteritis Authors: Bhaskhar Dasgutpa and Christian Dejaco. 9780198729204 Paperback 03 May 2016 Oxford Rheuumatology Library. Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide by Dr Kate Gilbert
There is a new book on the block coming out in May: Polymyalgia Rheumatica and Giant Cell Arteritis Authors: Bhaskhar Dasgutpa and Christian Dejaco. 9780198729204 Paperback 03 May 2016 Oxford Rheuumatology Library. Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide by Dr Kate Gilbert
jinasc
in
PMRGCAuk
8 years ago
NHS public consultation on Tocilizumab in GCA
Tocilizumab is one of the new generation of 'biologic' drugs which are being developed to treat a range of diseases, including inflammatory autoimmune conditions, like GCA and PMR. It has been used in a small number of GCA patients to see whether it could help reduce the risk of relapse and help reduce
Tocilizumab is one of the new generation of 'biologic' drugs which are being developed to treat a range of diseases, including inflammatory autoimmune conditions, like GCA and PMR. It has been used in a small number of GCA patients to see whether it could help reduce the risk of relapse and help reduce
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
8 years ago
Lupus Enteritis
Hi I have just been diagnosed with lupus
enteritis
, after having several tests done. I have never heard of this, has anyone else had this diagnosis. Would be very grateful for any info. Lucymay
Hi I have just been diagnosed with lupus
enteritis
, after having several tests done. I have never heard of this, has anyone else had this diagnosis. Would be very grateful for any info. Lucymay
Lucymay
in
LUpus Patients Understanding and Support
9 years ago
Causes of GCA?????????
Thought others might like to read this which I found when searching for a link between RA and GCA Rheumatoid arthritis and giant cell arteritis linked with solar cycles https://www.sciencedaily.com/releases/2015/06/150615142841.htm
Thought others might like to read this which I found when searching for a link between RA and GCA Rheumatoid arthritis and giant cell arteritis linked with solar cycles https://www.sciencedaily.com/releases/2015/06/150615142841.htm
PMRpro
Ambassador
in
PMRGCAuk
8 years ago
Hastings Meet up
After a great start in November and December the Hastings group is looking forward to a successful 2016. If you would like to join us at a meeting please let us know. If you know of others in East Sussex or if you are visiting Hastings and would like to meet with others who have polymyalgia rheumatica
After a great start in November and December the Hastings group is looking forward to a successful 2016. If you would like to join us at a meeting please let us know. If you know of others in East Sussex or if you are visiting Hastings and would like to meet with others who have polymyalgia rheumatica
pennyw
Administrator
in
PMRGCAuk
9 years ago
Some Statistics regarding Large Vessel Vasculitis
Some statstics came through to us this morning so thought I would share them, but please do not shoot the messenger, I am just passing them on. There is estimated to be 1 new case of TAK (Takayasu Arteritis ) per million here in Europe per year. Average age of onset is 23 years. 50% of those diagnosed
Some statstics came through to us this morning so thought I would share them, but please do not shoot the messenger, I am just passing them on. There is estimated to be 1 new case of TAK (Takayasu Arteritis ) per million here in Europe per year. Average age of onset is 23 years. 50% of those diagnosed
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
New PMRGCAuk Café Meet-ups in Orpington, Maidstone, Sevenoaks and Hastings
PMRGCA café meet-ups are a great new way to meet others with polymyalgia rheumatica and giant cell arteritis who live in your area. Four new café meet-ups - Orpington, Maidstone, Sevenoaks and Hastings - are now open for you. All the details are on the PMRGCAuk website - links below: Orpington - http
PMRGCA café meet-ups are a great new way to meet others with polymyalgia rheumatica and giant cell arteritis who live in your area. Four new café meet-ups - Orpington, Maidstone, Sevenoaks and Hastings - are now open for you. All the details are on the PMRGCAuk website - links below: Orpington - http
pennyw
Administrator
in
PMRGCAuk
9 years ago
Update to PMRGCA meeting on 21st October at the Copthorne Hotel Plymouth PL1 1AR
Update to PMRGCA meeting on 21st October at the Copthorne Hotel Plymouth PL1 1AR 2pm with Dr Bhaskar Dasgupta a Leading Rheumatologist and Head of Rheumatology at Southend University, Polymyalgia Rheumatica & Giant Cell Arteritis unfortunately he is unable to attend and we have managed to arrange at
Update to PMRGCA meeting on 21st October at the Copthorne Hotel Plymouth PL1 1AR 2pm with Dr Bhaskar Dasgupta a Leading Rheumatologist and Head of Rheumatology at Southend University, Polymyalgia Rheumatica & Giant Cell Arteritis unfortunately he is unable to attend and we have managed to arrange at
Hidden
in
PMRGCAuk
9 years ago
REVISED SPEAKER PLYMOUTH 21ST OCTOBER
Update to PMRGCA meeting on 21st October at the Copthorne Hotel Plymouth PL1 1AR with Dr Bhaskar Dasgupta a Leading Rheumatologist and Head of Rheumatology at Southend University, Polymyalgia Rheumatica & Giant Cell Arteritis unfortunately he is unable to attend and we have managed to arrange at short
Update to PMRGCA meeting on 21st October at the Copthorne Hotel Plymouth PL1 1AR with Dr Bhaskar Dasgupta a Leading Rheumatologist and Head of Rheumatology at Southend University, Polymyalgia Rheumatica & Giant Cell Arteritis unfortunately he is unable to attend and we have managed to arrange at short
Hidden
in
PMRGCAuk
9 years ago
Its BUG's session GOD i picked up good en
Anyway he said it might be TAD Gastro-
enteritis
& Sinus Infection Is a worry when lung docs have said i dont have that much lung matrial Given my infection rate. Is reasuring when GP say's its not infected even tho green Especily when my lung doc as said i will Not survive pneumonia again.
Anyway he said it might be TAD Gastro-
enteritis
& Sinus Infection Is a worry when lung docs have said i dont have that much lung matrial Given my infection rate. Is reasuring when GP say's its not infected even tho green Especily when my lung doc as said i will Not survive pneumonia again.
Hidden
in
Lung Conditions Community Forum
9 years ago
B12 & Hearing Loss
But I have been referred to a gastroenterologist at my request for radiation
enteritis
, which is further contributing to the B12 deficiency. It was such a breath of fresh air to talk to a doctor who had knowledge of B12 deficiency and believed me. And I might be wired for sound very soon. Lol 😃
But I have been referred to a gastroenterologist at my request for radiation
enteritis
, which is further contributing to the B12 deficiency. It was such a breath of fresh air to talk to a doctor who had knowledge of B12 deficiency and believed me. And I might be wired for sound very soon. Lol 😃
PoDundee
in
Pernicious Anaemia Society
9 years ago
Interesting bit of info! Thoughts?
RA started after I had flu and a hideous bout of gastric
enteritis
(hospitalised) when I was 3 months pregnant with my son. For about 3 years before my sons birth I ate lots of tuna fish a week (mercury!).
RA started after I had flu and a hideous bout of gastric
enteritis
(hospitalised) when I was 3 months pregnant with my son. For about 3 years before my sons birth I ate lots of tuna fish a week (mercury!).
tamnwill
in
NRAS
9 years ago
Should GCA sufferers take the shingles vaccine?
http://consumer.healthday.com/senior-citizen-information-31/misc-aging-news-10/study-ties-shingles-virus-to-dangerous-blood-vessel-disease-in-elderly-696591.html “…The researchers looked for links between the condition and the chickenpox/shingles virus because of the unusual way that it replicates in
http://consumer.healthday.com/senior-citizen-information-31/misc-aging-news-10/study-ties-shingles-virus-to-dangerous-blood-vessel-disease-in-elderly-696591.html “…The researchers looked for links between the condition and the chickenpox/shingles virus because of the unusual way that it replicates in
Asbeck
in
PMRGCAuk
9 years ago
Newly diagnosed with PMR
Being newly diagnosed with PMR I am so pleased that I found this site to learn and share more about this condition. I am grateful to Kate Gilbert who mentioned the site in her fantastic book ' Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide'. Although I live in New Zealand I was able
Being newly diagnosed with PMR I am so pleased that I found this site to learn and share more about this condition. I am grateful to Kate Gilbert who mentioned the site in her fantastic book ' Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide'. Although I live in New Zealand I was able
magmapearl3
in
PMRGCAuk
9 years ago
Giant Cell Arteritis - Take part in Clinical Research
Have you been diagnosed with GCA? Are you happy to try a new treatment? Are you happy to be involved in a clinical study? Please follow this link for more details. http://www.vasculitis.org.uk/news/giant-cell-temporal-arteritis-clinical-study
Have you been diagnosed with GCA? Are you happy to try a new treatment? Are you happy to be involved in a clinical study? Please follow this link for more details. http://www.vasculitis.org.uk/news/giant-cell-temporal-arteritis-clinical-study
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
"In The Loop Leeds" - keeping you informed about research
In the Loop is a pilot project run by Dr Louise Sorensen from the University of Leeds Rheumatic and Musculoskeletal Medicine. The project aim is to explore how they can get better at communicating research to patients, the public and non specialists. Many People have a keen interest in the latest Polymyalgia
In the Loop is a pilot project run by Dr Louise Sorensen from the University of Leeds Rheumatic and Musculoskeletal Medicine. The project aim is to explore how they can get better at communicating research to patients, the public and non specialists. Many People have a keen interest in the latest Polymyalgia
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
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